I'm sorry you are also dealing with this monster,yes many times feels like we are alone fighting a lose battle.
Rsd have no cure ,we can only reach remission if we got the right dr,treatment and support,you can get support here,now make the dr helps is sometimes also a battle.
Is not imaginary like some people believe at the beginning ,is real.
Been stress and not relaxing also make your body flare up hard,try to relax and rest,here is a link where you can find extra info, is rsdsa,hope helps ,Jesika .

http://www.rsds.org/index2.html

You are so young to be dealing with this. My apologies if i repeat anything anyone has said but I don't have time to read each and every line of the post.

it seems to me that if you are still experiencing that much pain, your doctor is not taking you seriously. I went through almost all the painkillers when i first got this so long ago and found only two have helped: dilaudid and fentanyl (the oral "lollipops" which are difficult to get through some insurance - let me know if I can help you with that - my new insurance denied me and then I fought and fought and got them to pay for it) ANyway....vicodine would be like hitting a fly with a toothpick for me! the painkillers I'm on are narcotics yes but I'm not addicted to them - dependent yes but there is a difference. And they saved my life. I can be out of pain or at least down to a 2 or 3 on that ridiculous chart the docs use most days.

You will have to learn to advocate for yourself, which is difficult for a 45 year old (which is how old I was when i got it) must less an 18 year old. If the vidodin isn't making a dent get a different drug - one more powerful or that will work!! You might have to go through a few of them but don't give up.

And yes I feel all alone in this all the time. Best thing I ever did was go to a pain support group. There may not be one with the focus on RSD but a pain support group is so comforting.

blessings to you and everyone who is enduring this life of pain.
Roberta

just so you know the whole story and while it may be the very rare exception, there could be negative consequences to the Calmare.

go to FDA website
search on Calmare
click on "repeat the search ..."

there are reports of people getting worse. Few patients and doctors know or take the time to report adverse effects. I assume there are others. I had such high hopes for this treatment. Now I'm afraid of it.

Hi, I'm sorry to hear that you are afraid of Calmare. I can only speak about my experience. Before I started, I investigated the technology and had a consultation with the MD at the practice. I knew what I wanted: an experienced MD over-seeing my care, proof of Calmare certification for him/her and all clinical staff, an opportunity to talk with a current patient, see a treatment being given (with the patient's consent), to gain an understanding of success and failure rates, risks and benefits, all costs and
billing practices.

I wanted a non-invasive treatment and neither Ketamine or SCS met this requirement. I had connected with a number of folks about the spinal cord stimulator, some had good/very good results and some had bad/very bad ones. For me, Calmare was the best choice. I was comfortable and made the decision to be away from home weeks at a time.

Once I started treatments, I could stop anytime I wanted. For the first 4-5 treatments, my pain did increase after being off the machine for the day but I knew ahead of time that could happen, along with being fatigued and I was prepared for this. The spike in pain did not last and the fatigue improved.

One last thing to offer is......I have heard stories of staff members in other practices putting the leads used to transmit the small amount of electricity used....in the same places on the body every treatment, with little conversation. That was not my experience. Each treatment was and should be so much more than this. Before any leads were placed, we discussed how I was feeling overall, how my pain was after the visit and overnight, how I slept, how my appetite was, any change in location of pain, any other health issues coming up, stress level, how things were at home, lingering questions, etc.....then we decided together where the leads would go. My Doc coordinated with my Doc back home, he also treated another medical issue that came up. While being treated, I could bond with others being treated as well. Each had horrible neuropathic pain and were getting positive results (reduction or elimination of pain). Lots of different conditions were being treated; full body RSD, Sciatica, neuropathy, trigeminal neuralgia, back pain and others.

I'm not trying to sell Calmare, just sharing in hopes it might help you and others understand a positive experience. They do happen. I'm happy to answer questions! Good luck with everything!

Deb

Deb,

Were any of the people that you come across being treated for Trigeminal Neuralgia had a nerve injured by a surgery, dental procedure, accident (likely peripheral neuropathy)? It was explained to me that if the pain was due to an injury, the injury had to be healed and if the brain did not recognize the healing, Calmare would stop the brain from thinking the pain was still there. Basically like phantom limb pain.

When I called this doctor's office and talked to his assistant, I asked if this procedure stopped the pain going into the brain or coming out of the brain. I was told "into" the brain....but what the doctor explained to me was pain coming out of the brain.

There is 100% probability that my nerve has not healed but I have no idea if it is still sending pain signals. I am still in pain when I am numb, So I do have some neuropathic pain.

When I started investigating whether or not my injury would still be transmitting pain signals, I found some adverse event reports on the FDA website, one specifically about this doctor. I also contacted a doctor who I've kept in touch with to ask if he thought my nerve would be transmitting the pain. When I emailed this doctor about what my doctor said and the FDA report, he became almost hostile that I had been researching behind his back and told me he would not accept me into his practice. It was a warning sign to me but over time, there will be others who can do the same treatments he can. If a doctor doesn't like a patient doing their own research and asking for 2nd, 3rd, 4th opinions, it is a huge red flag to me...especially when I'm wanting to use it for an off-label situation.

Hello pained,

I'm curious if you might possibly have 'anesthesia dolorosa'? Has anyone mentioned this to you or something called 'deafferentation pain'? I ask because in your post above you mentioned having pain "even though you were numb" which is a sign of 'anesthesia dolorosa' another type of nerve pain syndrome and one that I suffer with along with CRPS II that was from a nerve injury during surgery. Though I don't have it in my TN nerve it is very common to have it there - if you would like more information on one treatment that has been very effective for folks suffering from this please let me know and I will gladly search my files for the link.

Wishing you less pain very soon,
Tessa